When it comes to diagnosing rare diseases, even determining what your symptoms are and how to manage them can be difficult. Such is the case for Chiari malformation, a condition in which the area of the skull where the brain and spinal cord connect isn’t formed correctly. Slightly less than 1% of the population has this rare malformation, some of whom are asymptomatic, making diagnosis and treatment challenging for doctors. At NewSouth Neurospine, we will work with you to understand what it means to be a person living with and managing Chiari malformation.
My Skull Is Malformed – How Does Affect Me?
For those patients with Chiari malformation, symptoms can present in a variety of ways. There is no textbook case of Chiari malformation, meaning that symptoms can range from virtually nothing to pain, numbness or abnormal sensations in the arms, weakness, decreased dexterity or gait disturbance. It often presents with severe headaches that can come on suddenly after coughing, sneezing or straining the neck. Chiari malformation is often diagnosed incidentally on a CT or MRI of the head. Although it can sometimes been diagnosed early, even in ultrasound photos during pregnancy, it is often not diagnosed until late childhood or adulthood since the skull is constantly growing and changing in young children.
I Have My Diagnosis – Now What?
After being diagnosed with Chiari malformation, you might ask yourself what the next steps are. The majority of Chiari malformations do not require treatment. If the malformation does not obstruct normal spinal fluid circulation and the patient is asymptomatic, most doctors allow the patient to keep living normally with no interventions as long as he or she stays healthy and experiences no pain. In the cases where patients do need treatments, surgical decompression is a typical course of treatment. The type of surgery will vary based on the severity and stage of the malformation, but its overall goal is to restore normal fluid circulation.
Since Chiari malformation is a rare disorder and most affected patients can live with it with no change in quality of life, NewSouth Neurospine tends to lean more to the conservative side and only use surgical intervention in severe cases. These types of intervention depend on the diagnosis. You can make an appointment with one of our physicians to discuss your condition and how NS2 can help.